New relationships and intimacy in long-term care: The views of relatives of residents with dementia and care home staff

Abstract

Background There is limited research on what family members and frontline care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives' feelings, managing their possible distress and conflict. Methods This exploratory study investigated the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia, whilst still married to another person. It reports the themes that emerged in qualitative interviews with eight relatives of people with dementia and with 12 frontline care home staff working in two English care homes. Interviews took place in 2015 using a hypothetical vignette that unfolded in four stages. Thematic analysis was used to analyse the data. Findings The views of care home staff and relatives had similarities in general terms regarding the problems arising around expressions of sexuality in care homes: indicting that a light-hearted or non-physical connection between residents is deemed acceptable, but the moment it becomes a sexual relationship then decision making becomes more complicated. Staff were inclined to turn to managers for advice and to consider separating residents. They expressed familiarity with distracting residents from situations that were of concern. Relatives were considerate of the difficulties and dilemmas faced by care home staff. Conclusion The use of a vignette facilitated discussion of a potentially sensitive topic. Areas for further research are identified.

Not in the Brochure: Porneia and Residential Aged Care

“…We support the observation of many participants that residents have a right to privacy, and as long as residents are competent to make financial decisions elsewhere in their lives, they have a right to spend their own money on sex workers without the need for the facility to notify the family, or to seek their permission. We also found that both staff and family members often have a hazy understanding of how legal authorities such as powers of attorney relate to residents' sexual expression, and therefore, this is a particular area that warrants clear policy and education (Bauer et al, 2014;Wiskerke & Manthorpe, 2016). To include third parties unnecessarily on decisions about sex workers is at best institutional risk management, and at worst simply gossip.…”

Sexual Expression in Alberta’s Continuing Care Homes: Capacity, Consent, and Co-decision-making

“…An example of an especially restrictive approach is when the agent's decision to prohibit sexual expression is at odds with the resident's expressed desires. For instance, it is common for persons living with dementia in continuing care to develop new relationships with fellow residents, sometimes while they are married or in committed partnerships (Doll, 2013;Wiskerke & Manthorpe, 2018). This can be upsetting for community-dwelling spouses or partners who may then request that the new relationship be discontinued or that one of the residents be movedboth of which can be difficult for residents.…”

Staff responses to residents exposing their genitals in public in long‐term care settings: The gap between common and perceived best practices

“…More recently, a growing evidence base of psychosocial approaches to managing ISBs in people with dementia has developed. The perspective that is now accepted is that ISBs could be responses to contextual cues or unmet needs for intimacy that are innate, whether or not a person has dementia (Jones & Moyle, 2016;Kamel & Hajjar, 2003;Wiskerke & Manthorpe, 2018). Although there are few published and institutionally supported documents that include evidence-based behavioural recommendations for managing ISBs, some potentially useful strategies have been proposed as either stand-alone or supplemental interventions (International Longevity Centre -UK, 2011;Kettl, 2008;Syme, Lichtenberg, & Moye, 2016;Verdelho & Gonçalves-Pereira, 2017).…”

“…In the context of LTC facilities, the presence of ISBs poses practical and ethical dilemmas since they have the potential to impinge on the rights of others (staff and residents) and thus need to be adequately monitored and managed. Staff have reported feelings of distress, negative attitudes and difficulties with managing ISBs, all of which may increase the burden of care (Higgins et al, 2004;Onishi et al, 2006;Wiskerke & Manthorpe, 2018) due to the perceived violation of moral rules, invasions of bodily privacy and concern about the impact of ISBs on others (Dupuis, Wiersma, & Loiselle, 2012).…”